CHAPTER EIGHT / RESOURCES CHAPTER 8 / RESOURCES Cancer Support Community s resources for support... 72

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1 When my husband was diagnosed, I wanted to stay in touch with others but didn t have a lot of time, so I made a group on Facebook. I posted every couple of days and I got so much in return. For example, I d ask: could somebody help me with research? I d get lots of answers. It s an amazing tool. My community even set-up this caravan of dinners. This gave me the love and support that I needed to stay strong. CHAPTER EIGHT / RESOURCES Candice, caregiver Resources

2 CHAPTER EIGHT / RESOURCES CHAPTER 8 / RESOURCES Cancer Support Community s resources for support... 72

3 8Resources Brain Tumor Specific Support Accelerate Brain Cancer Cure ABC 2 aggressively invests in bold and innovative research and drives collaboration to speed the development of new and effective treatments for brain cancer patients. American Brain Tumor Association ABTA raises funds for brain tumor research and education; their website offers information, education, and support. American Cancer Society ACS offers information about brain tumors, treatments, and managing life with the disease; a search tool helps locate support groups; ACS offers the Health Insurance Assistance Service. American Society of Clinical Oncology / Cancer.Net Cancer.net is a resource for direct and accurate information about cancer treatment based on the expertise of clinical oncologists. CancerCare CancerCare provides free, professional counseling and support groups to individuals, families, caregivers, and the bereaved. CancerCare s Co- Payment Assistance Foundation: Cancer Support Community CSC provides support, education and hope to all people affected by cancer including personalized services at no cost. The Healing Exchange Brain Trust T.H.E. Brain Trust runs online support groups and forums for discussion on all brain tumors for patients, providers, researchers, educators and caregivers. Imerman Angels Imerman Angels matches anyone seeking cancer support with someone just like you - a Mentor Angel who is the same age, gender, and has beaten the same type of cancer. LIVESTRONG Foundation cancersupport The LIVESTRONG Foundation provides information and tools to help people affected by cancer. LIVESTRONG Navigation Services offers free referrals to counseling and other resources in your area. Musella Foundation for Brain Tumor Research and Information Musella Foundation offers education, support (emotional and financial), advocacy and guidance to brain tumor patients. Videos, articles, online support groups, and information about fundraisers for brain tumor research are also available. National Brain Tumor Society NBTS drives strategic research to find new treatments and advocates for policies to meet the critical needs of this community. CHAPTER 8 / RESOURCES 69

4 National Center for Comprehensive and Alternative Medicine NCCAM is the Federal government s lead agency for scientific research on the practices known as comprehensive and alternative medicine (CAM). NCCAM offers information on the value and legitimacy of CAM practices. National Cancer Institute NCI is the premier agency for cancer research, training and information in the US Federal Government. Their website has valuable information for all people affected by cancer including search tools for clinical trials. Financial and Legal Assistance Brain Tumor Copayment Assistance Program, Musella Foundation This program provides up to $5,000 in financial assistance per year to families who qualify and use certain drugs to treat brain tumors. Cancer and Careers CAC educates people with cancer to thrive in their workplace. Look online for free publications, career coaching, and support groups for employees with cancer. Cancer Legal Resource Center Center.org The CLRC provides free and confidential information and resources on cancer-related legal issues for anyone coping with cancer. Co-Pay Relief Program The CPR program provides financial support to insured patients who qualify to access pharmaceutical co-pay assistance. The program offers call counselors who guide patients through the enrollment process. Corporate Angel Network Corporate Angel Network is a non-profit organization that arranges free air transportation for cancer patients traveling to treatment using the empty seats on corporate jets. Healthcare.gov The new Federal website offering customized information about the various health insurance options for which you may be eligible, including comprehensive information about Medicare and Medicare Services through CMS ( LawHelp.org LawHelp helps low and moderate income people find free legal aid programs in their communities, answers questions about legal rights, and helps with their legal problems. National Cancer Legal Services Network NCLSN is a coalition of legal service providers who offer some free legal services programs to people affected by cancer. National Coalition for Cancer Survivorship NCCS offers free publications on insurance and employment issues for people coping with cancer. The Cancer Survival Toolbox is an audio-program that includes a section on Finding Ways to Pay for Care. 70 FRANKLY SPEAKING ABOUT BRAIN TUMORS

5 NeedyMeds NeedyMeds is a free, online clearinghouse to help people who cannot afford medicine or health care costs. This website includes information about services such as Discount Drug Cards, Medicaid websites, Federal Poverty Guidelines, and other useful information. Partnership for Prescription Assistance The PPA is a coalition of pharmaceutical companies, doctors, other health care providers, and community groups that help qualifying patients get the medicines they need. The website offers access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. Patient Access Network Foundation PAN Foundation provides assistance to underinsured patients. Patients or a member of their medical team can apply online or over the phone; a determination for assistance is generally made within one business day. Patient Advocate Foundation PAF offers information about financial resources and mediation services to assure access to care, maintenance of employment, and financial stability. Look for the Underinsured, Uninsured, and Financial Resource Directories, with information about alternative coverage options ( resources). Survivorship A-Z cancer Survivorship A-Z is a web-based resource providing practical, legal and financial information. The site includes the ability to make a computer-generated profile, personalized to your legal, financial, and social situation. CHAPTER 8 / RESOURCES 71

6 SM Cancer Support Community s Resources for Support Cancer Support Community s resources and programs below are available at no charge. CANCER SUPPORT HELPLINE Whether you are newly diagnosed with cancer, a long-time cancer survivor, or are caring for someone with cancer, CSC s TOLL-FREE Cancer Support Helpline ( ) is staffed by licensed CSC Call Counselors available to assist you Mon-Fri 9 am-8 pm ET. Our Call Counselors have been specially trained to answer your questions and link you to valuable information. AFFILIATE NETWORK SERVICES Almost 60 locations plus more than 100 satellites around the country offer on-site support groups, educational workshops, yoga, nutrition, and mind-body programs specifically designed for people affected by cancer. For a full list of affiliate locations, visit the Cancer Support Community website or call us at OPEN TO OPTIONS Free one-on-one decision counseling is available with licensed mental health professionals who can help you process information about your situation, and formulate a list of specific questions for the oncologist. Appointments can be made by calling and by visiting the CSC website to contact an affiliate providing the Open to Options service. CANCER EXPERIENCE REGISTRY The Cancer Experience Registry is a movement designed to help CSC better understand the social and emotional needs of people living with cancer so that we and others can develop new resources to support the millions of people living with cancer every day. The Cancer Experience Registry collects information about the experiences of people who have volunteered to share their cancer journey in a survey, and connects them to a network of resources. Join today at CancerExperienceRegistry.org. THE LIVING ROOM, ONLINE Cancer Support Community s The Living Room offers much of the same programming available at each CSC affiliate. On CSC s website you will find online support groups, discussion boards and social networking, build your own website services, and education materials. To access these services, visit These services are made available with generous contributions from CSC supporters. 72 FRANKLY SPEAKING ABOUT BRAIN TUMORS

7 Cancer Support Community and the National Brain Tumor Society together with our partners provide this information as a service. This publication is not intended to take the place of medical care or the advice of your doctor. We strongly suggest consulting your doctor or another health care professional to answer questions and learn more Cancer Support Community. All rights reserved. CANCER SUPPORT COMMUNITY AND THE NATIONAL BRAIN TUMOR SOCIETY THANK OUR PROGRAM PARTNERS: